At 35, Karen Erickson of Thousand Oaks, Calif., felt set. She had a career as a scientist, had healed from divorce, and was back to two-hour workouts of biking and running.
“My life revolved around working hard and playing hard,” says Erickson, now 46. “I was on top of the world.”
Until one day in spinning class, she blacked out. Earlier, she had noticed some breathlessness. “I thought I was just getting older,” she recalls.
Doctors diagnosed Erickson with exercise-induced asthma and prescribed bronchial inhalers, but the breathless episodes increased. Finally, two years after her initial symptoms, a blood test revealed a genetic form of chronic obstructive pulmonary disease (COPD), alpha-1 antitrypsin deficiency-related emphysema. Alpha-1, caused by a missing protein, affects 100,000 Americans, less than 10 percent of whom are diagnosed. Emphysema, a form of COPD, destroys the lungs’ air sacs.
“They gave me two years to live,” Erickson recalls.
Her initial response was denial but, inspired by doctors who treated her, she adjusted her outlook to: “I’m going to learn about this. I’m going to beat these two years.”
Now, nearly 10 years later, Erickson is awaiting a lung transplant and has 18 percent lung function. For five years, she’s used supplemental oxygen while she sleeps and works out. But she still exercises daily. “I throw a couple of oxygen tanks on my back and ride my bike for up to 45 minutes,” she says.
“She is an amazing athlete—to this day,” says Penny OBrien, a fitness trainer and former general manager of the Fitness and Wellness Center at the company where Erickson worked. “And her exercise has been a huge factor in her ability to be as well as she is.”
Erickson began receiving disability benefits in 2010, but she’s not lying around. She’s thrown herself into work for the Alpha-1 Association and Alpha-1 Foundation, advocating on public policy issues and speaking at congressional briefings, drug companies and fundraisers.
“When I started this battle, it was about beating the two years, staying healthy enough for a [lung] transplant and continuing to learn,” Erickson says. “But now it’s about doing all I can to raise awareness, to find a cure, and to find every patient who needs it. It’s the fight that’s kept me alive.”
She knows the disease has changed her, but she sees gifts in the change. “I am a much better person for having alpha-1. Before, I wanted to enter corporate America and make money. Now there’s nothing I wouldn’t do for another patient,” she says.
“There’s no point in my life where I would say I’m happy to have alpha-1. Every day is difficult. My bike rides now are at a pace I used to walk,” she says. “But when I hit the mountains, I see things I never saw before. I take in the beauty. That wasn’t in my life before.”